Wednesday, 1 August 2012

7 Weeks and things are backed up......

I've writing this post standing up because sitting down is a little sore. I've developed chronic constipation and a sore bottom is the result!  I know go on laugh, I know I would be if I was reading this about someone else, so you have permission! 

Constipation and any subsequent problems like haemorrhoids or piles resulting from it are rarely talked about because it's embarrassing. Especially in this country, but as changes in bowel function are a sign of possible cancer, why are we so scared to visit a GP and get things checked out? I'm glad I did, because it turns out I didn't have piles like I thought! 

Following all the operations I've had periods of constipation, due to lack of food and use of painkillers, its normal and a known problem. However for me, every time I found it brought on a case of piles. I'd self medicate with creams from the chemist and all was well especially as things got back to normal. But for the last 3-4 weeks I've been experiencing diarrhea followed by constipation and when things got moving again it was hard, large and very sore. Which gave me pain from what I thought were piles from the pushing and straining.

Things came to a head 2 nights ago when I was in so much pain I cried and cried. Swallowed down a load of painkillers to see me through the night and bit the bullet to visit my GP. A conversation, quick examination which wasn't as embarrassing as I thought it would be, has given me a proper diagnosis. The lump I thought was a haemorrhoid is in fact a skin tag. This is painless and needs no treatment. The pain is from a fissure just inside my anus, which every time I have a hard motion is opening up, bleeding a causing pain. (don't know whether its better/easier to have piles or a fissure to be honest)

My treatment has therefore changed. I've GNT ointment to help the healing process which could be several months, plus a laxative to keep the motions soft, given me the chance to heal.

Phew! I'm still sore, but knowing what the real problem is and talking to someone has really helped.

There, I've got it off my chest! Hopefully with the laxative things will get better very soon! I'm not sure if its a drug side effect, but as my diet hasn't changed, is rich in fibre and fluids, its got to me something I'm taking. Will keep an eye and let you know!  

Tuesday, 24 July 2012

6 Week Check

And all is well even if I cried.....a lot! :)

Am pretty sure this is not connected to the trial but more with the whole situation, so won't go into detail here.

Blood pressure and bloods were fine. We discussed the side effects I'm experiencing, which are as of today

  • Extremely sore feet
  • Slightly sore hands
  • Dizziness
  • Bouts of diarrhea 
  • Itchy sore scalp

Apart from the feet, they are mild and manageable. Feet and hands are in good shape though as I've really been looking after them, with plenty of moisturisers and regular softening foot baths. They was some concern that I was needing to take painkillers and we discussed reducing the dose. I'm on two tablets, twice a day. 

I have however elected to stay on this dose for a bit longer and see what happens. Most side effects are reducing the longer I take them as my body adjusts. I'm not back at work yet, so if I'm having a bad foot day it doesn't have too much of an impact.

I'll review it in two weeks and if there's no improvement will call and see about reducing

Next appointment is 11th of September, I need to get bloods and a chest x-ray just before. 

All in all, things are ticking along. 

Sunday, 15 July 2012

Update - Sunday 15th of July

Things are a bit meh! at the moment. I'm not good, but I'm not bad either. I don't feel right, but there's nothing drastically wrong either. My dosage was doubled two weeks ago and possible effects (because I do believe some things are in my mind) are
  • Very sore feet*, upto a pain score of 7
  • Itchy and sore scalp (have to think about when I comb my hair)
  • Mouth ulcers, although I don't have any today
  • Dizzy spells
  • Travel sickness even when I'm driving (just plain weird!)
  • Sore hands which are sensitive to water temperature

Nothing to write home about, but its really getting me down. I like to walk, to improve my mood and for general fitness, but this is heavily curtailed. Am hoping I get used to it, if not, I'm not sure how long I can keep up with it.

On the plus side, blood pressure isn't any higher than it was and general nausea has gone (apart from the travel sickness)

Have got my six week review next week, will speak to the clinicians then

*the feet look like there are little pouches just under the skin, which are swollen. It doesn't appear to be the muscle but the skin which is sore. I am moisturising, moisturising, moisturising.

Tuesday, 19 June 2012

Food Diary Week One W/C 12th June

I've read all the literature including the self help remedies. It's suggested if bloating or diarrhoea is a side effect to keep a food diary which will help identify triggers foods.

Where else should I record it, but here, all in one handy place!

12th June B - spring onion omelette L - egg mayonnaise sandwich on wholemeal bread D - chicken & vegetable stir-fry with hoi sin sauce and egg noodles

13th June B - grapefruit L - grilled bacon sandwich, wholemeal bread D - cottage pie, peas & broccoli and 2 muller fat free yogurt

14th June B - fruit salad L - savoury rice and salad D - fish fingers, waffles and beans

15th June B - scrambled egg on toast L - chicken pie, mash & peas D - pizza

16th June B - grapefruit L - nothing D - Chilli-con-carne and rice

17th June B - fruit and fibre cereal L - apple D - Roast beef, trimmings, fruit salad

18th June B - Scrambled eggs and wholemeal pitta bread L - apple D - Chilli, pasta and salad, muller fat free yogurt


Day 8

I've recorded my first blood pressure reading today, 127/82

I'm so not au fait with what each of the figures mean, just know I have to get in touch with the unit if either figure reaches 150/90. Looks like I'm within tolerance at the moment though, so all good.

Feet are still sore, but manageable. Am going shopping tomorrow for some shoes which should help keep the pain down. Voltarol gel, is brilliant!

Think my face has started to respond, my chin is sore and itchy, which isn't usual for me. Plus I've notice I'm scratching my scalp more. I don't think I've got nits (!!??) so maybe another effect.

Psychologically I am questioning my decision to start the trial. I'm still feeling very vulnerable and am trying to put everything behind me. However every time I take a dose, it brings it all back. I'm sure given a bit more time, I will feel better. The scars on the outside have healed but will take a bit longer for the ones you can't.


Sunday, 17 June 2012

Day 6

And I think I'm starting to feel some effects even if they are only in my mind ( only!!? )

My feet are so sore and I haven't been over indulging in the exercise department either. I've bought some cushion soles for my shoes and invested in voltarol gel to rub in. Feeling quite good now!

My next tasks will be to get some Epsom Salts and start having a soothing soak each evening. Any excuse. Have also planned a shopping trip to get a couple more pairs of shoes, with plenty of support and cushioned soles. I don't want things to get worse, so am preparing accordingly.

Like I said, not sure this is an actual side effect or a figment of my mind, but dizziness has started too. I'm keeping an eye on it, could just be today. I've taken my blood pressure and all fine too, so it's not that.

All in all, feeling fine, everything, whether connected to the trial or not is manageable

Friday, 15 June 2012

Day 3

" Move along please. Nothing to see here, move along "

Day three and really nothing to report. I feel tired and my feet are generally sore however I put this down to me walking a little more than I've been used to following the operations. I'm still building up my strength and my legs!

I've got my usual plethora of eczema, elbows and knees this time and blood pressure is fine.

No news is good news as they say ( whoever 'they' are )

Wednesday, 13 June 2012

Day 1

Took my two tablets last night as requested. Am pleased to say no adverse reactions.

Yes okay, my feet had terrible pins and needles all night sand are feeling sore but think they would have been like that anyway. I've also got a rash on my knees and back of my thighs, but it was starting to come on before I took them too!

I did have to rush to the loo today, but another effect of having my gallbladder out rather than the trial so not connected.

I've started a food diary, will publish that once a week, again more as somewhere to record it than anyone taking any notice of it!

All in all, nothing to report. Roll on day two


Tuesday, 12 June 2012

All Systems Go!

Had the all clear from the clinic today. Blood tests were fine, and the CT scan showed what it needed to show and nothing extra. No little Ted's! 

If you want to see how happy I am, I posted this on my other blog

This means the way is clear for me to start on the Sorce Trial of Sorafenib!

Today I had more bloods drawn as I gave permission for its analysis along with the cancerous kidney to help with another study. My blood pressure was 132/80 and I'm good to go.

I know I said I wasn't going to read the list of side effects, but I've been advised it's a legal requirement. They are:-


  • Hand/Foot skin reactions
  • Rash
  • High Blood Pressure
  • Sore or sensitive tongue or mouth
  • Diarrhoea
  • Abdominal pain, cramping or bloating
  • Fatigue
  • Loss of appetite which may lead to weight loss

And Less Common

  • Nausea and/or vomiting
  • Hair thinning or patchy hair loss
  • Hoarse voice

So some things to look out for. And if I don't suffer from any of these, doesn't mean I'm in the placebo group. Everyone reacts differently. My Nurse explained she had people on a previous study who felt they weren't on the drug but were and visa versa. I'm going into this with the view I won't have any, glass half full you see!

My blood pressure needs to be recorded every week too, been given a machine to take it myself. Already had a play, very easy to use. Have a funny feeling I may, for a while, be using it more often until the novelty wears off.

I'm to take two tablets every day for the next three weeks, either an hour before food or two hours after, ideally the same time each day. The plan will be to increase the dosage to two pills, twice a day, 12 hours apart. All depends on how I react to the medication.

I'm getting a lot of support from the trial nurse, have numbers to call if the self help remedies I've been given don't work, 24/7

Next appointment is Tuesday 3rd of July, must remember to get a blood taken the day before. If all is well, my next batch of tablets will be prescribed and released.

All in all, a productive day. I take the first dose tonight.

Wish me luck!

Monday, 11 June 2012

Oh, I am an idiot!

I can't believe what a plonker I've been!

I had an appointment today with the consultant who took my gallbladder out two weeks ago. My gallbladder or Geoff as he's been affectionately labelled, is the reason my kidney tumour, or Ted, was found. I was having a lot of pain and the ultrasound to confirm gallbladder issues, found Ted.

To start on this trial, I needed to either have Geoff out ASAP or wait for at least six weeks after starting and go for it then. Sorafenib can make healing a little difficult, so this makes sense. Geoff was causing me a lot of pain, so had to come out and my private health insurance came into play quite nicely!

At the appointment today he asked about the trial and kept talking about chemotherapy. I kept repeating (and correcting) saying drugs trial.

When I got home, it finally dawned on me that Sofafenib is actually a chemotherapy drug! What an idiot!

Makes me almost wish I'm in the placebo or control group!



Sunday, 10 June 2012

To be eligible to participate on Sorce Trial I need to be cancer free.

Last Wednesday I had blood tests and Friday was a full body CT scan with contrast. Not sure of the technical term, but I had to drink the 'lovely' contrast and had some also pumped in intravenously. For those of you who've had this type of scan it's painless but the stuff you drink is unpleasant. A cross between cheap orange squash and milk, yuk! 

A weird thing with the intravenous contrast is it makes you feel as though you've wet yourself as it courses through your bloodstream and hits the bladder. !!!! Luckily I'd had one before, when investigating Ted the Tumour, so was fully prepared! Imagine the embarrassment if you weren't! 

I've read the literature relating to the trial but quickly scanned the side effects. The mind is a wonderful thing and will get you through the most stressful and harrowing experiences. It can also however create things too! So I'm going into it sort of blind.

The only two effects I've been warned about is high blood pressure and sore hands and feet. Nothing I can do about the blood pressure but I've been moisturising and using my newly acquired Ped Egg with wild abandon! Feet are looking lovely! Should I paint the toenails?? Well I would but by gallbladder surgery is preventing full toe painting experience. Maybe next week

Blood tests have come back okay (should have asked what they were testing for, will when I go back) and I get the CT scan results on Tuesday.

Fingers crossed!

But if something is found, at least it's been detected and can be treated.

However short life to the blog!


The story so far

I will try and keep this brief. I'm sure you are reading this because you are actually interested in the trial, not all the crapiness that came before it.

I was sent for an ultrasound scan to confirm gallbladder disease as I'd been having more attacks of pain and nausea on 1st of February. At this scan the radiologist had a look around my other organs, a but like when the car is up on the ramp to check your brakes. While you're there, might as well have a look at the exhaust. (hopefully the radiology department don't get commission for finding more cases) I knew something wasn't right when the senior consultant was called in. That evening my GP confirmed I had a 5cm x 6cm tumour in my right kidney.

So my cancer or Ted the Tumour as I called it was found quite by accident

The kidney was removed on 14th of March. Was confirmed cancer when I went back for post op consultation on 26th of April with Urology. Finally saw my oncologist on the 17th of of May where I was told it was a 3 on the Lieberman Scale. Will add the full node, stuff thingy when I get it as I wasn't really taking it in at the time.

I was offered the chance of being part of this drugs trial and I jumped at it. (there was the small thing of having my gallbladder removed between 17th of May and the date the trial would start; I needed at least two weeks to heal! Very lucky we made it happen!)

SORCE: a multi-centre phase III double-blind placebo-controlled study designed to examine the efficacy and tolerability of sorafenib (Nexavar) in patients with resected (total or partial) primary renal cell carcinoma (RCC) at high or intermediate risk of relapse

You can read the full website details here

Sorafenib has been used as a treatment for advanced kidney cancer, where surgery isn't an option, it inhibits the growth and spread. This study though, is to find out how much protection it can give to people who've had their tumour and kidney removed and hopefully lower the instances of a recurrence in the following years.

I will be in one of three groups.
Group A gets the drug for 3 years
Group B gets the drug for a year and a placebo for 2 years
Group C gets the placebo for 3 years

There are side effects, they are however outweighed by the benefits (Bet I don't get the weight loss side effect! I know, I'm shallow) And out of 8 patients, 3 will be group A, 3 in group B and 2 in group C so my odds are good for getting at least a years cover.

In this blog I will share my feelings, thoughts, side effects and anything else relating to the trial. I have another blog Glass Half Full, which I will still be using, but thought it would be a good idea to keep things separate. However feel free to jump on over there too if you want to know more about me and my every day outside of the trial.